Dunja Dreesens

67 Introduction In 1996, Sackett et al described evidence-based medicine as integrating “the best external evidence with individual clinical expertise and patients’ choice”, and Charles et al tried in 1997 to define shared (treatment) decision-making (26, 166). Both heralded the more formal recognition of patient engagement. The WHO defines patient engagement as the capacity of patients, families, carers, as well as healthcare providers, to facilitate and support the active involvement of patients in their own care, in order to enhance safety, quality and people-centredness of healthcare service delivery (167). In the past, patient engagement might have been primarily a moral-ethical imperative (168), but this engagement is also associated with numerous beneficial outcomes such as improved knowledge, satisfaction and self-management and reduced decisional conflict (169-173). Moreover, involving the patient is important because physicians may recommend treatments that they would not have chosen themselves (174), and physicians are mostly not adept at predicting what their patients want (32, 63). These and other reasons to engage patients in decisions about care have led to the development of a range of knowledge tools (175, 176). Overall, there exists an abundance of tool types to engage patients in decision-making and contribute to patient-centred care. Examples of knowledge tools are clinical practice guidelines (CPG), protocols, patient decision aids (PDAs) and patient education materials (143, 177- 179). Knowledge tools distil and synthesize the highest quality knowledge and research (95). Patient-directed knowledge tools are aimed directly at the patient (family members and carers), with the goal to engage patients in dialogue or deliberation during a clinical encounter, or to support and/or improve patient decision-making which may or may not take place during a clinical encounter (175). The ultimate goal is to contribute to safer and higher quality healthcare. However, these types of tools are frequently ill defined (70, 88, 143, 178). Moreover, lack of clarity on development, content, and purpose has likely contributed to poor uptake (8, 47, 145, 180). Several streams of work have contributed to the development of this area. These include development of specific quality criteria for certain tools (such as PDAs, leading to IPDAS, the International Patient Decision Aid Standards) (181-184) as well as frameworks and taxonomies on patient involvement. The purpose of IPDAS is to enhance the quality and effectiveness of PDAs by establishing a shared evidence-informed framework (59, 60, 185). IPDAS does not consider other patient-directed knowledge tools. Several frameworks related to decision support tools have been developed (186). O’Connor et al developed a decision support framework to develop a specific PDA, concentrating on determinants of decisions leading to the Ottawa Decision Support Framework (187, 188). Another example is a taxonomy of outcomes developed by the Cochrane Consumers & Communication Group (CCCG) which can be used by researchers and others to conceptually map the range of outcomes, at different levels of health care, that might be relevant when assessing different forms of communication (such as shared decision making) (189). Chapter 4